Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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David Tuller: New Virology Blog post (May 3rd)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, May 3, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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  2. Snowdrop

    Snowdrop Rebel without a biscuit

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  3. trishrhymes

    trishrhymes Senior Member

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    I hope this means Esther Crawley will be asked to step down from the CMRC. If not, perhaps it's time for the MEA to withdraw from that tainted organisation. Since you started this thread, @charles shepherd perhaps you'd like to comment.
     
  4. dangermouse

    dangermouse Senior Member

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    :thumbsup: Thank youuuuuuu David Tuller :thumbsup:
     
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  5. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Fantastic response from David Tuller. And yes, Crawley needs to step down from the CMRC. She is completely unfit to associate with that organisation. She should not be working with children with 'chronic fatigue' either, since she has absolutely no idea about the difference between chronic fatigue and ME. Crawley and others play on the ignorance among their medical colleagues, to the detriment of hundreds of thousands of patients.
     
  6. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Have just noticed a thread on Twitter that identifies the young woman whose photo was used by Crawley in a slide at last week's BRS presentation. The woman had no idea what her photo was doing on that slide. I haven't embedded Isabella's own tweets since she has been unwittingly drawn into this debacle without knowledge or even having anything at all to do with the subject of the talk. You can click on the image and it takes you to the tweet thread where she comments. Crawley needs to explain herself. Does she consider this acceptable behaviour? As Isabella says in one of her later tweets, "This is so incredibly weird and messed up to me. Wondering how she even found this photo of me."

     
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  7. BurnA

    BurnA Senior Member

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  8. Valentijn

    Valentijn Senior Member

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    It really is creepy. Does Crawley go looking for photos of young adults with ME/CFS by searching for "preppy fashion blog" and "cricket sweater"? :confused: I'm starting to wonder if the MEGA fiasco has driven her off the deep end.
     
  9. sarah darwins

    sarah darwins I told you I was ill

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    Cornwall, UK
    She presumably chooses photos using the same 'stringent criteria' she uses for research.
     
  10. Valentijn

    Valentijn Senior Member

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    Ah. So a google search for "live human" and "not too sick" :p
     
  11. charles shepherd

    charles shepherd Senior Member

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    As I/we have stated many times before, the MEA has no current intention of leaving our position as a charity representative on the Board of the CMRC

    Belonging to a group such as this, which consists of a very wide spectrum of clinical and research opinion on both cause and management of ME/CFS, is obviously a very challenging and difficult task at times

    But I/we believe it is far more important to be 'inside the tent' of an organisation such as this, especially when it has a considerable influence over the direction that research into ME/CFS is moving forward here in the UK

    This means that I/we will agree with my colleagues on the CMRC Board at times

    And I/we will disagree at other times

    I/we apply exactly the same principle of being willing to sit down with people we may disagree with in relation to the work that we do on behalf of people with ME/CFS at the DWP (on benefits) and with NICE (on the 2007 NICE guideline) and elsewhere

    In relation to the subject under discussion, I know and like David Tuller (I invited him to come down to stay with us in the Cotswolds in December last year) and I have been in contact with David over the past few days

    I also wrote to Stephen Holgate and my colleagues on the Board of the CMRC yesterday to raise a number of concerns and objections about the presentation AND to make it clear that I/we fully support members of the patient community who have made constructive use of Freedom of Information Act to obtain unpublished data from the PACE trial.

    Questioning the validity of the PACE trial data has nothing to do with either harassment or behaving in a vexatious manner

    CS
     
  12. Barry53

    Barry53 Senior Member

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    Absolutely right, well done.
     
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  13. Yogi

    Yogi Senior Member

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    I am stunned and speechless right now.
     
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  14. Demepivo

    Demepivo Dolores Abernathy

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    It isn't the MEA who should be leaving the CMRC....

    How about Queen EC instead?
     
  15. Barry53

    Barry53 Senior Member

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    I think the point is that being on the board does not by any means constitute blind agreement with everything happening with CMRC. But being on the inside and having some influence on what happens does, to me, seem preferable to being on the outside complaining but having much less influence. It does of course mean that that influence should be utilised as best as possible.
     
  16. Esther12

    Esther12 Senior Member

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    To me, it does seem entirely reasonable for Charles to raise concerns with the board, and say that he thinks that Crawley should leave.

    If we're talking about the MEA leaving instead, is there any limit to what you would put up with from those running the CMRC?

    eg: If a researcher said "I think that my results show that these patients deserve to be hated", presumably you wouldn't want to be in a research collaborative with them? If they were vice-chair, wouldn't you think you had to walk away?

    With Crawley, we've had her clearly misrepresenting treatment efficacy (claiming PACE showed a recovery rate of 30-40% for CBT and GET); smearing critics, including Tuller and many patients, as anti-science and libellous; directing limited research funding to indefensible junk science like SMILE... how much worse could she show hereself to be before it was time to walk away?

    These are real questions too, rather than just rhetorical cheap-shots. I see the benefit of sitting down and discussing with almost anyone, but I think that there must be some limits with whom one would want to be in a research collaborative with. I don't know what those limits should be, and I'm interested to hear Charles's views on this.
     
  17. trishrhymes

    trishrhymes Senior Member

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    Thank you @charles shepherd for your reply. And thank you for trying to put our views to the CMRC.

    I can see the point of trying to make changes from the inside, and respect your viewpoint, though I personally can no longer agree with you that the MEA should be part of a body with Esther Crawley as its vice chair.
     
  18. NelliePledge

    NelliePledge plodder

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    not enough press interest to mean she would have to resign due to adverse public opinion. Only peer pressure from within and outside showing credibility is damaged and not meeting the groups standard will push her fellow group members into threatening a no confidence vote to obtain her withdrawal.
     
  19. Kati

    Kati Patient in training

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    I would like to be a fly on the wall at the next CMRC board meeting. I would like to know who approves of her presentation and who doesn't.

    Each members of this board needs to ask themselves whether they would like to have their name published side by side with EC as co-author of a paper, why or why not.

    Of course, @charles shepherd this is not directed straight at you, and i am sure you are acting in the best interest of the patients. But patients have a right to ask these questions and have a right to an opinion on exactly what happened last week. The way she behaved was very un-scientific, very unprofessional, and indeed libellous. Considering the history of the last 30 years with ME especially in the UK, patients have a right to competent care, and the most scientific and most professional research. EC simply showed word for word that she is neither competent, neither scientific, and particularily not professional. CMRC needs to decide whether they can live with what they know, andthat will be very telling if patients can trust them.

    Trust towards a researcher or towards a doctor is earned, not given. That one particular person's action simply confirms distrust and non-confidence. The scary thought is she never thought her presentation would have gone 'viral'. Hard to imagine what is going on behind closed doors.
     
    Last edited: May 4, 2017
  20. TiredSam

    TiredSam The wise nematode hibernates

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    She was slagging us off behind our backs behind closed doors and got caught out. Who knows how many other presentations there have been or how regularly she does / has done this. Ditto for her colleagues.

    Just goes to show that nothing that has been said in the last couple of years since non-sufferers started taking an interest, including journalists and top academics, has made a blind bit of difference to them. They haven't conceded one point in two years, or had any meaningful engagement with anyone outside their bubble. Head in the sand, keep going, business as usual. If that isn't anti-science, I don't know what is.
     
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